PVFS/ME/CFS Watch

Wednesday, September 28, 2005

Chronic Fatigue: New community: ME CFS Severe

I have started a new LiveJournal community for those with ME/CFS (and related disorders) and who are at the very severe end of the ME/CFS spectrum. The community is called me_cfs_severe, and will provide emotional support and information about very severe ME/CFS.

You will probably fit right into me_cfs_severe if some of these phrases, or very similar ones, describe you:
- You are completely housebound.
- You only leave the house to be taken to essential medical appointments, using a helper and a wheelchair or stretcher to manage it.
- You need to use a wheelchair and helper to get around even inside the house.
- You are bedridden, only getting up to use the toilet or a commode.
- You can't even get up to use a commode, and use a catheter or incontinence pads or similar.
- Your ME/CFS is progressive.
- You need help, or special technology, to use the computer.
- You are sicker than almost every other ME/CFS patient you know.

These descriptions are just guidelines, you certainly don't have to fit them all! But if they seem to be describing you pretty well, then this community is for you.

Membership of the new community is moderated at the moment, so if you join the community, please also email me and explain how the community is relevant to you - eg, do you have very severe ME/CFS, do you have a family member who has it, etc.

CFS Awareness Day Message 2004 "For The Severeies"

This message was posted to the CFS-Severe mailing list, a mailing list for those with the most severe types of CFS/ME, on the occasion of International CFS Awareness Day. Each awareness day, many people with CFS/ME post to different groups to improve "awareness" of CFS/ME, and I didn't feel I had the energy to do that this year so I posted this message instead.

Dear Severeies,

This CFS Awareness Day I wanted to talk to those who are probably the most "Aware" about CFS of anybody I can think of.

Us.

You and you and you and you. And me.

These so severely affected that literally every second of our days and nights is governed by this stupid goddam diseease. We never get even a tiny break, we always have to work out if our bodies can "afford" an activity in advance, even if that activity means taking one swallow of a drink, or turning over in bed.

This disease has betrayed us. Doctors everywhere have betrayed us - although with some notable exceptiions. The governments around the world have betrayed us. Our friends have often betrayed us. For some of us, even our families have betrayed us.

So what do we have left?

Ourselves.

Our determination to KEEP ON LIVING at any cost. And sometimes the cost is so high it would be mind-boggling to anybody who didn't have severe CFS and didn't understand.

So we need to keep up the good fight for another year, guys. Keep on hanging in there by any means we can. KEEP ON LIVING in this non-living type of living death.

Just hang on, however you can.

With a round of silent applause for us all,Ricky- - -

You go to the emergency room [with very severe ME/CFS] when things are REALLY REALLY bad, when you are just so desperate, beyond desperate for help and what happens? Not only do you not get any help but you end up even sicker.-- Jodi Bassett, very severe CFS/ME sufferer- - -

Wikepedia on Chronic fatigue syndrome

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is an organic disorder of unknown and possibly multiple etiology, affecting the central nervous system (CNS), immune system, and many other functions. CFS is characterized by a number of features, the most common and notable one being severe mental and physical fatigue (physical) fatigue, which is unrelieved by rest, and usually made worse by even modest exertion. It is currently considered by most authorities to be incurable, although some cases resolve or improve over time, and treatments bring a degree of improvement to many others.

[Treatments eh? I wonder which treatments 'bring a degree of improvement to many others' - there are none that I know of]

Saturday, September 24, 2005

Life with severe ME/CFS by Jodie Bassett

Jodie Bassett is a 29-year-old Australian woman who has suffered Myalgic Encephalomyelitis (ME aka CFS or CFIDS) for almost ten years now.

Jodie writes an account of an actual day she's had and explains "although it's a notoriously unstable illness, not just from day to day but from hour to hour as well, it is an accurate snapshot of my life at this time, an average day in my life."- - -

Interview with Jodie Bassett

On browsing through Technorati, I found the above link to Jodie through greenwords blog in Australia. It is such a rarity for me to find other severe ME/CFS sufferers who are bloggers, I hope greenwords won't mind if I copy the post on Jodie in full here below incase the link becomes broken. I've not had a chance to read greenwords posts or Jodie's first person accounts as I want to get this posted first incase it helps someone visiting this blog.

Note, greenword's sidebar says:

I am a person who lives with severe ME/CFS. That does not define my identity or my life but it does have an extreme impact on it. Mostly I am happy. Life's too brief and golden for me to choose otherwise! There is so much joy if you know where to look. I appreciate the good things in my life but I also thought it was time to shed some light on the reality of living with ME/CFS. This is my first ever blog - I hope you will read it gently. Go in peace. :-)

Here is the post:

JJJ interview with Jodi Bassett

Recently the ABC reporter Steve Cannane interviewed Jodi Bassett on his JJJ program 'Hack'. Jodi is an Australian woman who has severe ME/CFS. It was fantastic to hear someone with the severe form of this illness speaking publicly about her experience with it. The interview busts some of the persistent myths about ME/CFS and is well-worth listening to. I take my hat off to Jodi for her coherence on the day. For that half an hour, I felt that people with severe ME/CFS had a voice and were being heard. It was an amazing feeling.

You can hear Jodi's interview on the JJJ website:

Jodi Bassett on M.E. - In Bed for Nine Years

Jodi Bassett is 29 and she suffers from M.E. - Myalgic Encephalomyelitis - a disease that was re-named Chronic Fatigue Syndrome in 1980s. But Jodi says ME has got nothing to do with fatigue. Jodi emailed Hack after hearing someone make a throwaway comment about chronic fatigue on the radio and she wanted to set the record straight about her condition. To find out more information head to Jodi's website on M.E. at www.ahummingbirdsguide.com.

The interview aired on Triple J Radio Australia, on Steve Cannane's half-hour current affairs show Hack on August 22nd 2005.An mp3 audio file of the interview is available at: www.abc.net.au/triplej/hack/notes/me_m1107833.mp3The interview was kindly transcribed by Claire Bassett.

Friday, September 23, 2005

The Normblog interview and profile of 100+ bloggers

Each Friday at normblog, Prof Norman Geras, a British blogger and academic at the University of Manchester in England, UK, features a different blogger profile.

A list of all the interviews to date, and the links to them, can be found here.

Note, if I had completed Norm's interview as promised, my name would have been profile number sixty something.

Sorry Norm, still not managed to make a start on it. One day I will, with profuse apologies for breaking my promise last year.

The same happened with Netwoman in Canada. I received a request to be interviewed and accepted, only to find no matter how many days, weeks and months went by, I did not ever feel up to answering questions.

As there is no telling if my current health situation is temporary or not, maybe I have an aversion to putting myself in a box while my life appears to be suspended in limbo due to ill health. Perhaps when I am more familiar with the life that such an illness imposes on me, I may be able to answer questions on who I am and what I do and think these days.

Being struck down with Myalgic Encephalomyelitis (Chronic Fatigue Immune Dysfunction Syndrome) six years ago has been a life changing event that I could write a book about. Maybe I will, one of these days. When I feel a little better...

P.S. See Norm's books. His profile will appear here later, if I can find it.

Wednesday, September 21, 2005

Good news. There are now at least three research studies that I know of concentrating on identifying the gene responsible for chronic fatigue. Two are in the UK and one in the US [see below copied article]. It is likely there are more studies going on as this particular field of enquiry may lead to a blood test and treatment. See earlier posts here regarding Dr Gow's research at University of Glasgow, Scotland, UK.

Here is a copy (bold emphasis is mine) of an article September 19, 2005, special to the Los Angeles Times, by Judy Foreman entitled. I am copying it here in full incase the link becomes broken. Note the report quotes Dr. Anthony Komaroff, a chronic fatigue expert and editor in chief ofCFS: Research Update, as saying brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe.

Physiology of chronic fatigue begins to take shape; The brain, hormones, the immune system -- all those and more may figure in the syndrome.

"Many doctors and others have dismissed people with chronic fatigue syndrome as depressed, lazy or just plain whiny. Now a slew of research -- more than 2,000 scientific papers by some counts -- is suggesting that chronic fatigue is not a psychiatric illness, but a nasty mix of immunological, neurological and hormonal abnormalities.

Several types of brain scans, for instance, have shown abnormalities -- such as different patterns of blood flow to certain regions of the brain -- in patients with chronic fatigue, and other studies have shown that patients have difficulty thinking and processing information and are unable to do several mental tasks at once.

"There are objective brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe," said Dr. Anthony Komaroff, a chronic fatigue expert and editor in chief of Harvard Health Publications, a division of Harvard Medical School.

Chronic fatigue, which has no known cure, is more than feeling tired all the time. Definitions vary, but the one used by the federal government says the condition is characterized by persistent, unexplained fatigue that lasts at least six months, as well as four of the following: sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, unrefreshing sleep, malaise after exercise and impaired memory or concentration.

The syndrome -- which can come on after an acute infection, a head injury or a major life stress, or from no obvious triggers at all -- affects 800,000 to 2.5 million Americans, most of them women, said Dr. William Reeves, chief of chronic fatigue syndrome research at the federal Centers for Disease Control and Prevention. But the ailment is tricky to diagnose because its symptoms overlap with those of other conditions, such as depression, Gulf War syndrome and fibromyalgia.

A federal study now underway is designed to measure the activity of thousands of genes in 190 people, some with the disease, some without, to find a distinctive genetic fingerprint for chronic fatigue. The ultimate goal, Reeves said, is a blood test for the condition.

"This illness is a nightmare that is extraordinary," said Dr. David Bell, a specialist in Lyndonville, N.Y. "If you're lucky, you get over CFS in a couple of years. If you're not, it stays with you for the rest of your life."

Jean Harrison, 52, a former art restorer who lives in Salem, Mass., has been unlucky. She thinks she had mild chronic fatigue starting when she was 6, but she wasn''t diagnosed until she was 41, when her symptoms got worse.

"For a long time, my doctor thought I was depressed, so I exercised ... But when the doctor realized I kept getting much worse after exercise, she concluded I had CFS. I was thrilled to finally get a diagnosis, after all those years of people saying, 'What's wrong with you?'"

Now Harrison is "almost housebound," she said. "If I do too much, I can end up being asleep for days. If I haven't overextended, I can be awake for seven to eight hours. If I have supper with my family on a Sunday, I have to spend all day Monday in bed. It's a devastating illness."

Like Harrison, many people with chronic fatigue are first told they have depression. But the afflictions are quite different; depression triggers an increase in the stress hormone cortisol, and chronic fatigue triggers a decline, said Harvard's Komaroff. Although depression gets better with drugs such as Prozac, the fatigue of CFS does not.

Harrison's response to exercise is typical of many chronic fatigue patients, perhaps because in them, exercise triggers the release of fatigue-inducing immune chemicals called cytokines. People with the disease sometimes can exercise as hard as healthy people -- they just feel awful for a day or two afterward, Reeves said.

"There is considerable evidence from published studies that in CFS the immune system is overactive," Komaroff said.

In research published last spring, Christopher Snell at the University of the Pacific in Stockton showed that some people with chronic fatigue syndrome experience a flare-up of symptoms after exercise. Paradoxically, though, a 2004 analysis of data pooled from five separate studies showed that very gradual increases in aerobic exercise can reduce fatigue in some patients.

Given the complexity of chronic fatigue syndrome, perhaps it's not surprising that treatments are piecemeal and not very effective, and that some doctors get almost as discouraged as their patients.

"Very few doctors are willing to care for CFS patients because it is such a downer," said Dr. Hugh Calkins, director of electrophysiology at Johns Hopkins Medical Institutions in Baltimore.

Still, experts point to some remedies that might help relieve some symptoms. In doses five to 10 times lower than those used for depression, tricyclic antidepressants such as Elavil can improve sleep, Komaroff said.

And cognitive behavior therapy, which teaches people to reevaluate their negative thoughts and behaviors, does help some people with chronic fatigue to make optimal use of the little energy they have.

But mostly, it's a game of patience -- and hope that the strides in research will translate into better diagnosis and, ultimately, better treatments for chronic fatigue."

Tuesday, September 20, 2005

Online dating - FM/CFS World Interview with Lisa Lorden

Lisa Lorden, a well-known writer on a variety of subjects important to those with Chronic Fatigue and Immune Dysfunction (CFIDS) and Fibromyalgia (FMS), spoke with OFCW via telephone on a warm afternoon in August.

Lisa, pictured above, is very familiar with the array of health, social and interpersonal issues affecting patients with invisible disabilities. She has coped beautifully with a life interrupted and offers some insights that many of us will find helpful.

Sunday, September 11, 2005

Cymbalta provides pain relief for Fibromyalgia?

UPDATE: Shortly after publishing this post, I received the following comment from an Anonymous reader:

Please talk to some women taht have tried this drug before you take it. A friend of mine's mother was prescribed this drug because she had migranes. She told me that this drug made her feel crazy and want to kill herself. It has psycological effects for some women, so please talk to some people on this drug before you use it also look further into possible side effects.

Thanks for the comment. I have heard similar adverse reactions from someone who tried Prozac: she knew of the downside, that it could make one feel violent or suicidal, but did not recognise the downside when it happened to her and she wanted to kill her much loved dog because it was being overactive and getting on her nerves.

Please note, any treatments that are mentioned in this blog are only filed here for my own reference. This is not a regular blog, I never check the visitor stats. Most of the time I forget anyone visits here and I always get a shock when someone comments. Then I cringe when I realise other people actually read some of this stuff. I do not recommend anything except resting, not even exercise.

By the way, I have made slight progress since my six week rest regime. Did not want to mention details yet as it is early days. The change is miniscule but major to me but I am not yet clear if there has been an actual improvement or whether its just a case of my managing better to live within my baseline. Can't tell the difference yet, until I try a few other things.

This is the first time I have some sort of control over the pain, and am bathing in the light of not experiencing so much pain. It is such a change not to feel so ghastly 100% of time. Eyes are clearer, wider and I can see out of them better for most of the day, and for longer. Concentration lasts longer. Adverse reaction to stress doesn't last more than a several days. Sore throat doesn't come on so quickly and joints and muscles don't flare up so quickly, and when they do, the pain starts subsiding within days. I can tell this through my blogging.

Also, before I forget I have organised a few major projects over the past three months and completed one major one (a new fire) started in January when the old one broke down. New lino has been laid in the kitchen and the guest bedroom has been transformed - all that's missing is the new carpet (next year) and a few details to do with electrics and a vanity mirror and shelf. After the lino was installed I could barely walk for three days. Pain was so great in right shin, I had to hop around on left foot and use a stick for walking. Thought of a broom handle under my arm but it hurts to lift my arms. Thankfully, that malady has disappeared. I've still not been beyond my gate since March 2003. I wear socks indoors, and only wear slip ons to go to the post box or back gate. Maybe the arch in my right foot is going more flat, and I strained the leg while walking around more than usual when lino was being laid - plus the old carpet tape that was stuck to the floor kept sticking to the bottom of my socks which meant pulling my leg up each time to get free. That's all I can think it was. I did too much walking too soon. All the usual symptoms flared within a few days and took me all week to reach the point I was two weeks prior. So, I am taking all increments slowly which is why I am not rushing out the door and down to the beach - yet. I have a feeling I might be able to get 50 yards to the beach and back without it setting me back for weeks and months after. The trouble I have is not in sustained walking, it's being vertical for longer than ten minutes. Still can't sit up longer than 5-10 minutes without the body feeling like its crashing and collapsing inside. Which is why I still cannot get out in a wheelchair. Can't sit up for long enough without feeling ghastly ill and brain seizing up like meningitis.

Over the past two months I have managed to sit outside, on a low foot stool (chairs are more difficult) leaning against the wall. Used a timer. Increased it from 5 - 10 minutes over 2 months. Sunlight hurt my eyes, like it does when you have flu. You know how you don't feel like sunbathing or facing the breezy outdoors when you are suffering the height of flu? Well, that is how I feel every day, without exception. All days are bad, some days are just worse than others. But lately the worse days have been less. The worse days used to be nearly all the time.

A friend is coming to stay for a weekend at the end of September. I am planning another six week rest regime after that. Takes a lot of planning and organising and getting six weeks of food and groceries in place.

P.S.

In a previous post here, where I logged the start of my rest regime, I received this comment from Richard, again - probably because of the way the Blogger commenting system is set up - logged as Anonymous:

"Anonymous said...Hey I hope you stick at it with the rest periods, I looked a this site completely accidentally I used to have M.E. and reading this brought back memories of a hard time, even though i was quite young! I know it seems like a stupid, annoying and completely exasperating idea, to sleep or rest even when you don't want to, but it worked for me. I really hope you keep at it, also the pet thing really helped, cats rule for companioship. Kind Regards. Richard."

Richard, thankis for the kind comment - if you ever happen upon this site again, please let me know your web or email address. Thanks.

Lulu in Wales

Fellow ME sufferer S, at A Life in Wales blog, is facing difficult times. Lulu is one of her two cats. The photo was taken from S's blog. Thinking of you S. God bless. Things will turn out for the best, you mark my words. [I think you are a bit too isolated where you are anyway] I'll email soon.- - -

CYMBALTA

Recently, SB of Abide blog says her doctor said he might have something that could help her Fibromyalgia.

Encouraged by the research and his own patients' experience he has put SB on a Cymbalta trial.

A reader at Abide commented about using Cymbalta, saying it gave her more energy, and someone she knew went from wheelchair to walking because of Cymbalta.

SB helpfully pointed out an article on Cymbalta published by Medical News Today October 19, 2004. Here is a copy:

The antidepressant Cymbalta (duloxetine HCl; pronounced sim-BAWL'-tuh), a dual-reuptake inhibitor of serotonin and norepinephrine, 60 mg once or twice daily, significantly reduced pain in more than half of women treated for fibromyalgia, with and without major depression, according to 12-week data presented this week at the annual meeting of the American College of Rheumatology.

These data are being presented one month after another study, in which Cymbalta also significantly reduced pain in women with fibromyalgia versus placebo, was published in Arthritis and Rheumatism.

"The results in these study patients were very striking in the degree of reduction of pain, which is the primary symptom of fibromyalgia. In addition, Cymbalta significantly improved these patients' quality of life and overall functioning, as measured by quality of life and disability scales," said Lesley M. Arnold, M.D., University of Cincinnati College of Medicine, Cincinnati, Ohio, who presented the study. "For many, the pain of fibromyalgia makes them so sensitive to being touched that even a hug from a loved-one can be intolerable."

In the study, Cymbalta's effect on pain was independent of any effect on mood, and there was no significant difference in response rates between patients in the study with and without major depression.

Fibromyalgia is a chronic disorder that causes widespread pain and tenderness in the muscles and soft tissue of nearly 6 million Americans, predominantly women.1 According to the National Fibromyalgia Association, patients often experience a deep muscular aching, throbbing, twitching, stabbing and shooting pain that "knows no boundaries, migrating to all parts of the body and varying in intensity." Neurological complaints, such as numbness, tingling and burning, are often present and add to the discomfort of the patient.

While the cause of fibromyalgia remains unknown, it has been linked to abnormalities in the brain's neurotransmitters, serotonin and norepinephrine, the same neurotransmitters believed to play a role in major depressive disorder, diabetic peripheral neuropathic pain and stress urinary incontinence.1

There is no approved treatment for fibromyalgia. Cymbalta, a balanced and potent serotonin and norepinephrine reuptake inhibitor, is proven to help treat the emotional and painful physical symptoms of depression. It also is the only approved treatment for management of pain caused by diabetic peripheral neuropathy, a type of nerve damage. Cymbalta is not approved for the treatment of fibromyalgia.

Study Findings

More than half of patients treated with 60 mg of Cymbalta, once or twice daily, responded to treatment after 12 weeks, compared with one-third of those taking a sugar pill.

Patients treated with 60 mg of Cymbalta, once or twice daily, were significantly more likely to experience a sustained treatment response than those treated with a sugar pill (44 percent, 43 percent and 19 percent, respectively).

Patients treated with 60 mg of Cymbalta, once or twice daily, had functional improvements on the Sheehan Disability Scale which measures disability at work, in family life and in social life, that were significantly greater than those of patients taking a sugar pill.

Cymbalta 60 mg twice a day also relieved the pain associated with tender points often associated with fibromyalgia.

Treatment-emergent adverse events were more common in patients treated with Cymbalta 60 mg once or twice daily, than in those treated with a sugar pill (79.2 percent). Events were typically mild to moderate in severity.

Patients taking Cymbalta 60 mg once or twice daily were more likely to discontinue because of side effects than those taking placebo (21.2 percent, 23.3 percent and 11.7 percent respectively).

The most common side effects for patients taking Cymbalta (occurring in at least 5 percent of patients and at twice the rate for those receiving placebo) were nausea, dry mouth, constipation, diarrhea, decreased appetite, nasopharyngitis, increased sweating and anorexia. In addition, for patients taking Cymbalta 60 mg twice daily, sleepiness and feeling jittery were common side effects.

Cymbalta is indicated for the treatment of major depression and the management of diabetic peripheral neuropathic pain, both in adults. As Cymbalta has not been studied in children, Lilly discourages its use in those under 18.

Cymbalta should not be confused with Symbyax™ (pronounced SIMM-bee-ax), a medicine for bipolar depression also marketed by Lilly. Symbyax is a combination of olanzapine, the active ingredient in Zyprexa®, and fluoxetine, the active ingredient in Prozac®. Symbyax is available in capsules of 6 mg/25 mg (olanzapine/fluoxetine), 12 mg/25 mg, 6 mg/50 mg and 12 mg/50 mg. Cymbalta is available in 20 mg, 30 mg and 60 mg capsules.

Important Safety Information

Patients being treated with antidepressants should be observed closely for clinical worsening of depressive symptoms and suicidality. Patients and their families should watch for these as well as for anxiety, agitation, panic, difficulty sleeping, irritability, hostility, aggressiveness, impulsivity, restlessness, or overexcitement and hyperactivity. Call the doctor if any of these are severe or occur suddenly. Be especially observant when starting any antidepressant therapy and whenever there is a change in dose.

Prescription Cymbalta is not for everyone. People who are allergic to duloxetine hydrochloride or the other ingredients in Cymbalta should not take it. If you have recently taken a type of antidepressant called a monoamine oxidase inhibitor (MAOI), are taking thioridazine or have uncontrolled narrow-angle glaucoma, you should not take Cymbalta. Talk with your doctor before taking Cymbalta if you have serious liver or kidney problems, glaucoma or consume large quantities of alcohol. Women who are pregnant should talk with their doctor before taking Cymbalta. Nursing while taking Cymbalta is not recommended.

In the fibromyalgia study of Cymbalta, the most common side effects were nausea, dry mouth, constipation, decreased appetite and anorexia. In clinical studies of Cymbalta for depression, the most common side effects were nausea, dry mouth, constipation, decreased appetite, fatigue, sleepiness, and increased sweating. Cymbalta is also approved for the management of neuropathic pain associated with diabetic peripheral neuropathy. In clinical studies of Cymbalta in these patients, the most common side effects were nausea, sleepiness, dizziness, constipation, dry mouth, increased sweating, decreased appetite, and muscle weakness. In all clinical trials, most people were not bothered enough by side effects to stop taking Cymbalta. Your doctor may periodically check your blood pressure. Don't stop taking Cymbalta without talking to your doctor.

For full patient information, visit http://www.Cymbalta.com.

About Lilly

Lilly, a leading innovation-driven corporation, is developing a growing portfolio of first-in-class and best-in-class pharmaceutical products by applying the latest research from its own worldwide laboratories and from collaborations with eminent scientific organizations. Headquartered in Indianapolis, Ind., Lilly provides answers - through medicines and information - for some of the world's most urgent medical needs. Additional information about Lilly is available at http://www.lilly.com.

This press release contains forward-looking statements about the potential of Cymbalta for the treatment of fibromyalgia and reflects Lilly's current beliefs. However, as with any pharmaceutical product under development, there are substantial risks and uncertainties in the process of development and regulatory review. There is no guarantee that the company will apply for or receive regulatory approval for this indication. There is also no guarantee that the product with be commercially successful. For further discussion of these and other risks and uncertainties, see Lilly's filings with the United States Securities and Exchange Commission. Lilly undertakes no duty to update forward-looking statements.

1. American College of Rheumatology. Fibromyalgia Fact Sheet. Available at: http://www.rheumatology.org/public/factsheets/fibromya.asp. Accessed October 4, 2004.